What is cystic fibrosis, exactly?


Now that’s a question. Cystic fibrosis is… Well a lot of different things to a lot of different people. Nearly eleven thousand in the UK and in the UK each week two people die from CF and five more babies are born with it, which probably means a lot of you are watching this in search of answers to that big question. So, let’s get started. Cystic fibrosis is about genetics, you can’t catch it. But if both your parents have the CF gene, there’s a one in four chance you’ll be born with the condition. About one in twenty five people carry the gene and most doesn’t even know it. And I should say at the start, there’s currently no getting rid of it. All sounds a bit gloomy, right? But whilst there’s no cure, a lovely life is still possible. Just look at me! You see, I have CF. So I think I’m a good person to tell you a little bit more about it. Cystic fibrosis is caused by a faulty gene, that disrupts the movement of salt and water in the bodies cells, making the mucus and people with CF thicker and sticker. This sticky mucus causes problems, mainly in the lungs and digestive system but also affects other parts of the body too. It’s not nice. The small airways in the lungs can get clogged up with this mucus, causing infections and over time damage to the lungs. So what does all that mean for everyday life? Well, here are some of the symptoms. Frequent chest infections, severe or prolonged coughs. Wheezing or shortness of breath. Abnormal bowel movements, difficulty gaining weight and for most men infertility. There’s also the issue of never being able to meet up with anyone else with CF. Basically we can make each other unwell
because of the bugs and infections that get transmitted between people with the condition. For better or worse CF is a part of me. It may be an unhealthy relationship but there are a lot of daily treatments to tackle cystic fibrosis effectively which can make our union that bit more harmonious. A whole host of antibiotics to fight infections in my lungs, they’re not all that colourful, but you get the idea. Physiotherapy to help shift the mucus that builds up around my organs. Enzyme capsules to take with food. They’re really not that hard to swallow. And talking of food, we need a special high fat diet to make sure our bodies get all the nutrients that it needs. And more drugs to thin that sticky mucus. People with CF sometimes need to take over 40 tablets a day. It’s a burden for sure.
But it’s the preferred option. If conventional treatments no longer work, a lung transplant might be needed. Cystic fibrosis presents daily compromises and challenges, but with careful management and the right treatment people with CF can lead full and happy lives. Work, travel, family, it’s all possible. Recent figures suggest that half the people with CF will live past their forty seventh birthday. But it’s also thought that a baby born today with cystic fibrosis could live longer, as life expectancy continues to increase with
the amazing advances in treatment and care. So, what is cystic fibrosis? It’s a serious condition, but one that an army of people out there are very serious about beating, for good.

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